Sarcoidosis

Bone marrow sarcoid

03/16/2009

Question:

Thank you so much for your previous help and I greatly appreciate you answering questions voluntarily. I have emailed in the past regarding bone marrow sarcoid. I have continued to have spread through my hands, feet, and now to my left femur and bilateral humeri and ulnas,mandible and ribs. Functionally, I am getting worse and have drawn up wills, living wills, and power of attorney. I have tried Prednisone (which I felt made me worse.) I currently take Plaquenil and try to take Trental, but it is too nauseating. 4 months of Humira did not help. My rheumatologist is recommending Enbrel, but I am hesitant due to the study published at your institution. She does not recommend methotrexate because I am still trying to conceive, although we do have some embryos frozen. A pulmonologist has recommended 18 months of Cytoxan. I feel that I am getting worse and I was wondering what your opinion would be regarding Enbrel or Cytoxan. Also, although I had three bone marrow biopsies for diagnosis, my rheumatologist is recommending once a year biopsies to monitor for disease since my ESR and ACE levels have always been normal. Actually, all of my blood work has been unremarkable (LFT;s, chem 7, BUN, cr, Ca++) except for my WBC (2.9) and HCT (from 45 down to 32 recently) I do not understand this recommendation of continued biopsies since my MRI`s have always been consistent with showing lesions in the marrow at exactly where my symptoms are. Do you agree with continued biopsies? It seems too extreme.

Answer:

It is difficult to recommend a treatment by email, and I would encourage you to discuss my recommendations with your doctors. Given the low WBC, a bone marrow suppressant (e.g., methotrexate or cytoxan) may be difficult for you to tolerate.

In my experience, infliximab is superior to Himura for refractory sarcoidosis, especially in those with low WBC. I would give infliximab (Remicade) a try before considering other options. If Remicade fails, cytoxan or methotrexate would be reasonable alternatives. I agree with embryonic preservation in anticipation of possibly requiring one of these treatments.

Please note: only your personal physician or other health professional you consult can best advise you on matters of your health based on your medical history, your family medical history, your medication history, and how information from any of these databases may apply to you. Neither University of Cincinnati (NetWellness) nor any party involved in creating, producing or delivering this web site shall be liable for any damages arising out of access to or use of this web site, or any errors or omissions in the content thereof. (More)